Pages

The Words You Never Want to Hear a Doctor to Say.

Monday, February 9, 2015

I have good news and I have bad news.

And then my heart sunk.

But let me rewind a minute.

***

Some might wonder why I am sharing such personal information about me and my family. I have thought about this long and hard and discussed it with Seth. These are the facts. This is our story. This blog is a documentation of our life. This is our life. And if I can share what happened in our life -- good, bad, or otherwise -- and help even just one other person, then I have served my purpose.

***

Warning : this post is very long with very few photos but an important story to tell.

A couple month's ago, I shared that Mason started preschool in September at a school that helps him with his speech delay. Through the school we've tried to assess his hearing to make sure that his hearing wasn't causing the speech delay. We know he can hear us because he responds when we say things and understands when we tell him to do something, but we don't know if he can fully hear out of both ears or if one is better than the other or if he can only hear certain levels of noise versus others. He first had his hearing assessed back in March 2014 but he wouldn't wear the headphones, so they couldn't finish the test. He went back for his follow up in September 2014 and the same thing happened. In the mean time, we've gone to various other doctors and appointments to rule out anything. One of those doctors recommended a sedated hearing test so that the doctors could fully test his hearing. Our insurance approved it and it was scheduled for 7:30am on Thursday, January 29, 2015.

We arrived at CHOC (Children's Hospital of Orange County) at 5:30am -- much, much earlier than I would like to be anywhere but sleeping in my bed. But alas, our other option was 12:30pm, which at first sounds lovely, but when your child can't eat for 8 hours before the procedure, would be pure torture to all involved. So we opted for the early procedure time and I am so glad we did.

Seth and I woke up early {around 4am} to shower and get ready to take Mason to the hospital. Around 5am, we had a quick breakfast, and I went and woke Mason up last minute. The poor boy was so confused, but I quickly changed his diaper and told him to lay his head on my shoulder and close his eyes. I was able to put him in his car seat and buckle him in and then he started crying a little. We turned on the DJ Shuffle CD and it calmed him down a little. A few minutes later, we were at the hospital, valet parked our car, and went inside to check in. Mason was AMAZING and just hung out in Seth's arms the whole time. We got signed in, went in the elevator to the 3rd floor, checked in again, and then waited for the nurse to come get us to sign some paperwork. I was already pretty impressed with the hospital before we made it up to the 3rd floor, but once there, they had a couple TVs and they were playing the Disney Junior channel. Mickey Mouse Clubhouse happened to be on and kept Mason's attention and distracted him from the fact that we were at the hospital. The nurse came to get us, we signed a bunch of papers and got wrist bands identifying us as Mason's parents (and Mason as Mason) and then we went back into the waiting room to wait. By now Mason was getting a little antsy and probably super hungry since he is used to having milk and eating almost right after waking up. We gave him our phones and encouraged him to watch TV. We were called back shortly thereafter and went to a room with a TV and some toys. Now I was more impressed with the hospital. They really know how to cater to kids. We sat Mason in the crib bed and let him watch more Disney Junior. He played with a couple of the toys and then the nurse came in to take his vitals. He was NOT happy about this and they weren't able to fully get what they needed. They said it was no problem and they would get it later when he was more calm. They walked us down the hall to weigh him and get his height and he was not having that either. Seth had to get on the scale holding him and then by himself and they subtracted since they needed an exact weight for medicine purposes.

We went back to the room, watched some more TV, went to the toy room to play a little, and then went back to our room. We met the doctor who would be doing his hearing test {and coincidentally enough she has a kid that goes to Mason's school and she sees Mason everyday} and we met the anesthesiologist. They asked us some questions, we watched more TV, and then came time for Mason to get some medicine to help him relax and to help him forget that they would be taking him from us. {I wish I had that medicine because that was the HARDEST part for me}. We opted for the liquid medicine that is giving by mouth via syringe. He is pretty good about taking medicine and took the first couple mL well but once he tasted it, he refused the rest. The nurse had to be the bad guy and hold him down and give him the rest. The medicine made him kind of woozy so we had to either hold him or make sure he was sitting in the crib bed so he didn't fall and hurt himself. Almost instantly he seemed more calm and we were able to take his jammies off, change his diaper, and get him into the hospital gown. Mason in his hospital gown was the cutest and saddest thing I have ever seen. After he was changed, they started to wheel him out and down the hall. We opted to say goodbye at the end of the hall instead of in the room and so we got to walk with him down the hall. He just layed in the bed, looking around, but not moving. You could tell he has been medicated. We got to the end of the hall and I kissed him and told him I loved him and I tried to hold it together. I teared up just writing that and thinking about him leaving us. I was happy he had the medicine and wouldn't think we were abandoning him and he didn't cry at all. My brave boy! I held it together even though I wanted to cry my eyes out that my little boy was being taken away by doctors into a scary operating room where he would no nobody and there would be nobody there to comfort him.

We checked in with the front desk, they gave us his "code" to watch his progress on the screen in the waiting room, and they gave us a pager so we could go down to the cafeteria to get a coffee real fast (so they could page us if they needed us). Seth asked if I wanted to drink our drinks in the cafeteria since we had time but I wanted to get back upstairs as soon as I could. We went back up, gave the pager back, and sat down and waited. And waited. And waited for what felt like forever. We ate a snack, checked our emails and social media, and waited some more.

Seth and I were talking as we were waiting in the waiting room for Mason's test to be done. Do we want the doctor to come back and say "everything looks great with his hearing! there is no problem!" or do we want the doctor to say "looks like your son has some hearing loss"? Seth asked me those questions on Thursday and to be honest, I didn't have an answer. I told him I didn't know and we will just figure out when the doctor tells us what the results are.

Oddly enough we didn't have to wait much longer because a short couple of minutes later and a nurse was calling us into the "family room" to wait for the doctor to come talk to us. I kept checking the monitor for updates but must have missed the fact that we was done because the nurse came to get us sooner than I anticipated.

The nurse left us in the family room for what felt like forever until the doctor came in. And then she said those words...

I have good news and I have bad news.

And my heart sunk.

My main concern was that my baby was ok. And he was. THANK GOODNESS. The doctor said that the procedure went well and that he did really good and that he was in recovery now. THANK GOODNESS. And that was the good news.

The bad news was that she found that he had some fluid behind his ear drum that had caused a little bit of hearing loss and if we didn't do anything about it, would cause more hearing loss. She recommended we go see an ENT to get that straightened out. She thought worst case scenario, the ENT might recommend tubes and that would help him greatly. Ok, no problem. This is not bad news.

And then she hit us with it... {and please excuse me as my knowledge of medical terminology is very minimal}. Since Mason was sedated, he obviously couldn't tell them when he heard a sound so they were monitoring his brain waves to find out if he could hear the sounds. Well the brain waves are supposed to spike at 1, 3, and 5. Now I don't know what that means, but the doctor said that his brain waves were not spiking at 3.

And my heart sunk even further. My mind started racing. What does that mean?????? What is wrong with my baby??????

She didn't know what that meant since she is not a neurologist but she said that the brain waves did not look like what they would look like if he had autism (which is what they originally thought) but she didn't know what it meant. She said it was not urgent (THANK GOODNESS) but she recommended seeing a neurologist because he has something wrong. I couldn't even say anything but "ok. ok. ok". She asked if we had questions, and I couldn't think of anything. She said that the report would be ready the following day (Friday) and that we could pick it up then and take it to the doctor (which is what we did -- and she started the referral process for the ENT and neurologist and genetic testing. We should get the insurance auth's in the mail soon).

The doctor left and I think I was just in so much shock. Seth and I walked to the waiting room again and the nurse took us to recovery to see our boy. He was still sleeping when we got there and he looked so peaceful. I'm not going to lie, all these thoughts started racing through my mind. Why is he still sleeping? Shouldn't he be awake? What if he doesn't wake up? Clearly I watch too many TV shows. He was obviously fine and hooked up to machines that were monitoring him and he was being watched by the nicest nurse. She explained everything to us and I felt more at ease. Mason started to wake and I wanted to cry again. He was ok! THANK GOODNESS. I didn't know what the expect because I had never seen anyone come out of anesthesia before. He was ok at first and then started crying and freaking out a little. He reached up for Seth and the nurse said it was ok to hold him. He started pulling on his IV and all the cords attached to him and the nurse took off his heart monitors (those sticky pads stuck on your chest to monitor your heart) and his oxygen monitor. She eventually took out his IV and put a cotton ball and bandaid on (which he also hated). He just hugged Seth so tight and only cried a little. The nurse got him some apple juice (he needed to start with clear liquids first in case he threw up - we didn't know how he would react to the anesthesia). He didn't want it there so after we were discharged, I gave him some in the car. I sat with him in the back seat because they warned us that since he was still coming off his sedation, if he fell asleep and he head slumped over, he could stop breathing, so I sat with him. He sucked down all of his apple juice and then we arrived home.

By now he was acting more like himself although he wasn't completely off the medication. We got inside, I sat down, and Seth got Mason some water. He sucked that down and then hopped off my lap to go run around. He seemed back to normal. But not quite. I forgot that I was supposed to be watching him (mom of the year) and he immediately crashed into the side of the couch and fell down. He wasn't hurt at all (and it was actually kind of funny because he totally looked drunk) but I picked him back up again and turned on the TV. We ended up giving him some Cheerios (which wasn't exactly following the rules but he was acting ok) and he devoured them. We gave him some other food and let him watch TV for a while. He wanted to run around but every time he did, he fell over and stumbled around like he was drunk. We finally got him to sit down for a little while and the medication seemed to wear off.

Then it was time for a nap. I was terrified (I am so paranoid!) that he would stop breathing or something and had planned to put him down, let him fall asleep, and then go sit in his room. I knew he wouldn't fall asleep with me in there so I would let him fall asleep and then go watch him. But no nap ninja had other plans. He ran around his room, knocked all the books off his book shelves, banged on his blinds, and slammed his dresser drawers... for two hours. And never slept.

We ended up getting him and let him come downstairs. We watched a movie and ate more snacks and he was totally fine. We had dinner and we put him to bed. I will admit, I was still worried, but I kept checking the monitor and he was fine.

Overall, it was a day with a roller coaster of emotions. I'm SO SO SO glad that he didn't behave for the regular hearing test because I honestly think we would have never known all of this stuff if we hadn't done the sedated hearing test. They might have been able to know there was fluid behind his ear drums (I don't know how that is detected) but we would have never been able to monitor his brain waves and known that there was something wrong. I am a firm believer that everything happens for a reason and in this case, the reason showed itself. Now I haven't googled what not seeing a spike in brain wave 3 means, mainly because you never know what you can find on the internet. I can be your best friend or your worst enemy. I want to hear it from a doctor first. I am hopeful that the insurance will approve us seeing a neurologist soon and that we can begin to get some answers.

I used to be jealous that everyone else's child was doing this and that or saying this and that, but now I know why mine wasn't and still isn't. I was jealous of other's children and wondered why mine wasn't at that stage or why he wasn't meeting his milestones like they were. He's different than they are. He is his own person, developing at his own speed. I now have a small insight into why he might not be developing as fast as they are. But to me? To me he is perfect - in his own way. And he shows us he loves us - in his own way. And he tells us what he needs, maybe not in words - but in his own way. When he reaches for me, I know he needs me. When he kisses me on the lips (without me asking for a kiss), I know he loves me. And when he reaches out for a family hug with Seth and I, I know he appreciates all we do for him.

30 comments:

Elizabeth, I am so sorry to hear this. But also so glad that you are on your way to getting answers!! Sending so much love & positive thoughts your way, you are one amazing mama - and Mason is one strong boy! Xo

Maybe it's the hormones or maybe just thinking of seeing that sweet boy sedated at out of it has me all teary. Things always happen for a reason so that hearing test was obviously needed big time. And I'm glad you have answers about his hearing. And will get more soon! And do not Google anything. Who knows what crazy stuff you'd find!

I'm sorry to hear he needs more testing, but I am happy you were able to find out some answers to point you in the right direction. I hope you get more answers soon and that any further action is easy on you and him!

Oh momma!! I can only imagine all the emotions you were (and still are) experiencing!! I'm so sorry you don't have all the answers now, but thank heavens for doctors who specialize! I know you'll get this figured out! Mason is so lucky to have you and Seth as his parents! It's obvious how much you love him and how willing you are to do what ever he needs! Praying for you all!!

Oh Elizabeth, you are one strong momma and exactly what your sweet Mason needs!! I'm over here about to cry and wish I could just HUG you through the computer.. I can't imagine having to watch your little boy go through all those tests; I am so thankful that you're getting answers and doing all you can to help him. I'm totally with you, don't go googling stuff!! I hope sharing this personal journey was therapeutic and comforting, there are so many people here to support you guys!! xo P.S. Mason is too cute in those jammies!! :)

Oh friend!! I can only imagine how you and Seth are feeling. But thank goodness for great doctors and the ability to find answers!Mason is such a sweet little man, and he is so lucky to have such amazing parents. Keeping you in my prayers.

Oh my sweet friend. I love you, I love Seth and I love Mason. I'm so sorry that you are going through this and I wish I could be there to support you in person. Please let me know if there is anything that I can do for your family or answer any questions.. Don't forget I'm a pediatric surgery/recovery education nurse! He is so darn adorable in those jammies! Thank you for sharing your journey and your experience. And I'm thankful that you are finally getting some answers! LOVE YOU!

Liz! Oh friend, I am so happy that you and Seth have been proactive about Mason's speech and now his hearing. Some parents ignore the signs because they fear the unknown. My prayers are with you and the boys. I'm so far away but I am always just a phone call away. Love you!

I'm so sorry you all had to go through this. My younger brother didn't talk until he was almost 4 because of fluid in his ears. The doctor they had was against tubes and as soon as they switched doctors and he got tubes he started talking. They said it's like laying under water in the bathtub. You can "hear" but everything is fuzzy, which makes it hard to decipher specific sounds and learn to talk! Hopefully the tubes will help a lot for mason too! As for the brain wave thing I have no advice for you, but I will keep you in my thoughts and prayers.

Oh I'm so sorry you had to go through all of this.... but like Erin said everything happens for a reason. Having that hearing test is leading you to more research but hopefully to some more answers. I hope if you do get the tubes that helps Mason out. And I couldn't agree more with waiting to talk to a doctor. There's too much info when you google and it's overwhelming. I think you're smart to wait. I think it's brave and smart of you to share your story. Because this is your life and it's holding back to not share. I've always felt that way about blogging too. Yes we want to document the good but sometimes the hard needs just as much attention. :) Sending you hugs friend!

I'm so sorry you had to go through all of that, but am so glad you are on the way to getting more answers. My Jude had to have surgery in November and it was so hard seeing him sedated and hooked up to all the wires and IVs. You're right, they need medicine for us moms during the procedure! I hope everything starts to get figured out and I'll be thinking of you!

Oh my gosh, to go through this....what a brave mom, dad and Mason! I am so glad he's ok and they can probably fix whatever is causing the hearing loss. I lost 33% of the hearing in one ear when I was younger and am totally fine now...I think it's more common than it's talked about. I hope the rest of the testing/results come back fine and you don't have to visit too many more doctors!! Seeing your baby like that is not fun! We had to do something similar when Cam was just a year, and I hate every second of it, but it was a relief to have the results. Hang in there, Momma!!

Oh my gosh, Elizabeth. I had no idea you were all going through this. I am so happy to hear that he did ok with the procedure, but those words are NEVER easy to hear. I hope and pray that everything is ok with your sweet boy, that last paragraph had me in tears. It's SO true, every little one develops at their own rate and you love them no matter what. I have to remind myself of this ALL the time.

I hope that this isn't anything serious and if it is Mason is SO lucky to have such amazing and supportive parents who love him unconditionally. xoxo

I can't even imagine the struggle you are going through and certainly went through with all the testing. So happy some type of answer has been provided. Hope you continue to receive answers without a long line of tests. Big hugs!

Hello there - Hang in there - I know all of this is hard. HARD - you are doing all of the right things taking all of the right steps. We have been going through some of the same things with our daughter. She was recently diagnosed with Autism Spectrum Disorder - with the main impairment being expressive language delay. We sought out all the speech and hearing info we could and began treatment for expressive language delay in November. Take things one step at a time. Know that Mason is who he is and is wonderfully made. It is so easy to compare your child to other children but it does no good ...because he is who he is and it doesn't change a thing about how much you all love him and how much he loves you. Kids learn in different ways and at different paces. I am so glad you have news and you can move forward from here. If you ever need anything - let me know!!! I am a click away. Give your boy a BIG HUG and remember it's one step at a time. Ally

Man, I couldn't even get through that post without tears streaming down my face for you. Your positivity is amazing and like you said, everything does happy for a reason! I struggled with some complications with Brantley's brain during my pregnancy and although it's a different situation, I shared many of your same feelings of jealousy and "Why us? Why my baby?" So needless to say, this post really hit home. However, you will get through it and it will be okay. Mason is a special little guy with two amazing parents. Hang in there and stay strong!

oh the sniffs. I would be a mess watching Aria roll away from me. I definitely have no idea about the 1 3 5s, but I sure hope your insurance lets you go see the neurologist soon and you guys can figure it all out. Comparison really sucks though, and it is hard to not do. He is the perfect Mason though, there is just no comparing!

Oh girl, I'm so sorry you went through that. I'm so glad the test went well, but I too would lose it seeing my child getting rolled down the hall into an OR. It really makes me appreciate overall health- I can't imagine how parents of kids that have cancer and other hospital-required stays do it. Mason truly is a special kid; obviously I don't know him in person, but he just seems like the sweetest, and most fun little boy :) I hope everything turns out well!

Oh friend! I am so sorry you had to go through all of that. I pray that the doctors find answers soon. Mason is so awesome and I love reading about him and seeing his pictures everyday! Prayers for all!

Im sorry for all the uncertainty, that muat be the hardest part. Praying for your dear son and family. My daughter was sedated last year and youre totally right about them seeming 'drunk' thats pretty much the only highlight of such a procedure. Take care!

Oh honey, I'm praying for you guys. For answers and for love and support. You are so incredibly brave and strong. I'm sure this was not easy to go through or put down into words. There are some really amazing doctors out there - stay hopeful! You are a wonderful mama and are doing so well with that little guy. We love you!!

Hello and welcome to my blog! I'm Elizabeth. Wife to Seth and mama to Mason. Lover of Starbucks, chocolate anything, and sunshine. Here on my blog, you'll find a little bit of everything as I navigate through motherhood with a son with autism. Pop around, stay awhile. So glad you stopped by!

Images and Content

All images and content are property of Elizabeth Birenbaum. Copyright 2012-2017. All photos are taken by me (unless otherwise stated and credited). Please feel free to use, pin, or share any images (that are not of my child) but please remember to give proper credit and do not claim as your own. Thank you!